"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." – Khalil Gibran

A.S. Face 1818: Daniel King

Sugarloaf Marathon (May 2017)

As I drove home on that spring day in 1997, the words I’d just heard took hold. I was crossing the Fore River Bridge on I-295 in Portland, Maine, when a simple, straightforward sentence put an exclamation point to years of frustrating, escalating pain and confusion: “You have been diagnosed with ankylosing spondylitis.”

I kept thinking to myself, ‘Arthritis? Me? I have a chronic disease? My vertebrae are fusing?’ After years of debilitating, misunderstood and increasing pain, there it was. The truth.

In October of 2017, I completed the Maine Marathon. It marked the second consecutive year of finishing three marathons.

The journey from symptoms to diagnosis to medication to endurance running was as long as it is surprising.

The disease had left me with fusion in several locations in my spine and decreased my mobility. Playing with my children on the floor consisted of getting on all fours and letting them climb on me. Anything else was too painful. Bumping into an unseen object or stepping into a hole sent me into convulsions. Breathing deeply was impossible. Sneezing was impossible.

The mobility in spine is and was severely compromised. I perfected the art of putting on a pair of socks without being able to reach down far enough with both hands. I had resorted to wearing Velcro sneakers and slip-on shoes to avoid tying shoelaces. The list goes on.

There were numerous times prior to diagnosis where I suspected, something’s really wrong here. The cause of the pain and stiffness was misunderstood for years. To this day, people still ask me about my, “bad back” and “sciatica.”

When I was finally referred to a rheumatologist in February of 1996, Dr. Larry Anderson ordered an exhaustive set of tests, including X-rays. Front, back, sides. Trying to position myself on the X-ray table was so painful, it brought me to tears, as well as the technician.

By this time, physical activity was a far-flung notion. Whenever I attempted to break into a jog, two or three steps were about all the pain would allow. My diaphragm screamed, ‘Stop.’

After years of drug trials, I began Enbrel injections in 2003. As I recall, the relief began fairly quickly and some light activities became palatable and more enjoyable. Breathing wasn’t as painful. At some point, I noticed that I wasn’t waking up at night from the pain as often. I still wake up, but not every single time I turn.

About seven years ago, my daughter, Doria, was getting ready for her high school basketball season and wanted somebody to run with her. I told her I’d give it a try.

I hadn’t worked out seriously or consistently since my mid-20s. I wasn’t expecting much.

At first, a quarter mile was all I could muster. Doria would run ahead. I’d walk for a while and try again when she looped back in my direction. After a little while, I could do a mile. Soon, she was practicing with the basketball team and I was on my own.

I started to feel some benefit and kept going. There’s a roundabout down the street from our house, exactly one mile. I vividly recall the euphoria of making it to the roundabout and back without stopping. I could run. I could breath and my legs were responding.

Then I noticed a couple friends posting road race photos on social media. It looked fun. Doria and I registered for the Jingle Bell Run in December of 2010 in Freeport, Maine. A fundraiser for, drum roll please, the Arthritis Foundation.

I was hooked for all the right reasons. I was feeling better. The road and trail running community is supportive and inclusive of all ability levels. And, yes, it stirred a little competitive juice. In short, I smelled fun and benefit.

After a year or two, I contemplated running more regularly and increasing the mileage. It felt as though the running was counteracting the many side effects of the disease and medications, most notably fatigue, headaches and focus. I consulted my rheumatologist, Dr. Brian Daikh, asking if such a physical load was advisable. His answer was simple: “If you feel up to it, go ahead.”

From there, I methodically, upped the ante. The 5K turned into a 10K, then 10 miles, then a half marathon. The more I ran, the better I felt. Physically and mentally. There are times when it hurts and hurts a lot, but it pales next to what AS has done. I’m always aware of the pain and the side effects. There are good days and bad days. For the most part, though, my body has held up.

At my annual checkup, we celebrated the triumph of three marathons completed in 2016. Since then, I added three more: Sugarloaf Marathon (May 2017), Last Man Standing Ultramarathon (September) and the Maine Marathon (October). Next year, I have plans for my ninth and 10th marathons.

Dr. Daikh said the combination of treatment and running has slowed the progression of AS for me. When I see photographs, though, sometimes I’m frustrated. It’s as though I’m looking at somebody else because of what AS has done to my posture. My doctor tells me to keep the focus on maintaining the mobility that I have.

When I run, I forget AS for a little while. When I run far, that amounts to hours.